The micropreemie journey can be like walking through a minefield for both preemies and their families. The moms and dads of the earliest babies celebrate not only the milestones, but also the minutes. Every hour in the early days is hard won. Every milestone met, a triumph. A micro-preemie parent’s courage and resilience may be tested to the very limits. The struggle may feel never-ending, but it’s important that parents know they are never alone. Our micropreemie support mentor, Ginger, was kind enough to answer some questions about her own journey and the kinds of support micropreemie parents can really use. To connect with Ginger for a listening ear or emotional support, click here.
1. Did you have any idea you might give birth prematurely?
We had no idea that we would deliver prematurely. I had went to the doctor with a few minor complaints the day before. But he did tests and an exam, and said I was having a perfect pregnancy. The next day I was in labor but also in denial because everyone was telling me it was just Braxton Hicks. At around 8 pm my coworkers convinced me to call my husband and go in to the hospital. The next day after unsuccessfully trying to stop my labor we were thrust into this world of the NICU life and having a micropreemie.
2. What was your premature birth experience like?
I was in the hospital for two days. They tried to stop my labor with magnesium. I was so confused – I still didn’t believe I was going to have my baby at 23 weeks. I thought they were going to be able to stop it and send me home. I had to convince the doctors to try all life saving measures because of how early it was. My husband and I suffered from infertility for 15 years and I was not giving up. God also told me not to give up hope. I prayed and begged and pleaded until the doctors agreed. They told me the future was bleak. Our daughter would never walk or talk, she would have brain damage, could be blind, even worse. They said that the equipment would damage or kill her if it didn’t fit. I said God will take care of her, I’ll be her eyes, her legs, her mouth… anything she needs me to be, I will be that for her. They believed me and tried. My water broke. They all rushed in, an entire team. I was having her, breech, feet first. My cervix closed on her throat. They had to cut my cervix to get her out and they cut her neck in the process because my leg slipped and hit the bed. All the nurses had grown attached to us at that point. Their faces were all filled with tears and they were crying as hard as I was. They had heard all I had said about our struggle, and like us they really didn’t know what was going to happen. Judging from their faces, I thought it was too late. I was so sad and so confused and everything felt so up in the air. I felt like I was free falling and watching a lifetime of dreams and hopes washing away down the drain.
3. How did you adjust to your new reality as a micropreemie parent?
I just threw myself right into the NICU life. I was there the entire 116 days with the exception of 5 days that I was sick. I took a notebook and I journaled everyday. I just decided to treasure every single day I was given with her, if that was going to be 1 day or 100 years. I also wrote down all the questions I wanted to ask or research, and I asked them….usually both at rounds and to my trusted nurses. It was hard… I went from working two jobs to sitting in a hospital room willing and praying for my daughter to live. At that point, she was all that mattered.
4. Do you think there are some aspects of the prematurity journey that only other micropreemie parents can understand?
I think there are several aspects of being a preemie mom that only other preemie moms can relate to. All the terminology. Hitting milestones late, needing therapy, extra medical attention, how every ounce of weight counts, not being able to hold your child for months, not getting a full pregnancy, just the unknowns about what will happen to your child, if they will ever be wireless, if you will ever be able to hold you baby without worry that intubation tubes will fly out.
5. What kinds of support meant the most on your journey?
On our journey the support I got the most out of was from my nurses. I grew a huge bond with them. I still feel like they are my family and still visit them frequently. I had an amazing husband and we held on to each other for dear life through the experience. I didn’t realize there were other mentors out there until nearing the end of my journey. It was very frustrating having people say they understood, but knowing they never had a 1lb 4oz baby born at 23 weeks. I know they were trying to help and give us support, but it felt like they were just lying to me. They didn’t have this experience and couldn’t know what it was like. I think it would have helped to talk to someone who really had gone through the same type of thing or close to it.
6. What kinds of support do you wish you’d had during your time in the NICU? How about after your preemie came home?
Once we got home I had lots of premature birth support
. I had birth to three (early intervention), a home health nurse, and my hospital nurses were just a phone call away. At that point I was busy adjusting to doing everything for my child instead of having nurses to help, so I was too busy to reach out, but if I had developed a relationship with a fellow preemie mom, I’m sure we would have continued to talk and I’m sure it would have helped.
7. If you were talking to a brand new micropreemie parent today, what would you feel it was important to tell them?
If I was speaking to a new preemie mom I would tell them: advocate for your child because no one else will. Ask questions, tons of questions! Everything you want to know. Pray… pray hard. Get early intervention as soon as possible, because it can only help and give you support as well. Take it one day at a time and treasure it. Follow God and your heart before all else. Love your baby, that is still your child no matter diagnosis. They are still a part of you – your body may have failed you, but love will bring you through.
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